I am a patient with a learning disability – the NHS is letting us down

Three people with a learning disability die unnecessarily every day. If staff had the right training, this could be stopped

I know we’re lucky to have healthcare available to everyone in this country, but people with learning disabilities are not getting the quality of care they should. I have a learning disability and I know how difficult it can be to access the NHS. There are 1.4 million people with a learning disability in the UK and research shows that 1,200 are dying avoidably in NHS care every year.

Attitudes of healthcare professionals need to improve when it comes to learning disability. I have been seen by doctors who don’t take my concerns seriously, or do not take the time to listen to what I have to say. These bad experiences put me off going to see a doctor when I need to. I know which doctors I have had a good experience with in the past, and if they aren’t available, I tend to delay my appointment until they are free. I shouldn’t have to wait longer just because certain GPs don’t have a good understanding of learning disabilities and the support I need.

I have arthritis in my joints, which causes me a lot of pain and discomfort. I had keyhole surgery on my knees to treat it, but my doctor discharged me even though I told him it was still causing me pain. I didn’t understand why they were closing my case, even though I wasn’t better. I asked the doctor but didn’t get an answer. This means I need to make another appointment, but you begin to lose faith and wonder if it is worth the time and stress it causes.

Getting a good doctor and building a relationship with them can be difficult so I find it frustrating when my doctor changes during my treatment. It can take a long time for me to explain my concerns and build trust, so if I am then transferred to another GP, it can be stressful. This happened to me several times while I was waiting for surgery on my knees. Having to start again with a new GP takes a lot of time and delays me getting the treatment I need.

There is a great learning disability nurse I see at Homerton University hospital. However, I know there are not enough. Research by Mencap has shown that 42% of NHS acute trusts do not have a learning disability liaison nurse, so I am one of the lucky ones. She has a full understanding of learning disability and takes her time to listen to me and asks my opinion. I have epilepsy, so it’s important that she explains the treatment I need in an accessible way. Other doctors have rushed me and I’ve been left feeling confused. I understand that hospitals are busy places, but having a learning disability nurse to support me makes the process easier. There should always be a learning disability nurse on call, but this isn’t the case. I’d like to see more learning disability nurses being employed by hospitals until all medical staff are able to give the right care to people with a learning disability.

I also find letters from the hospital hard to understand. They use complicated language, which means I have to take them to work where somebody can help me work out what they mean. It would make my life a lot easier if they were written in a less complicated way. One of my friends, who also has a learning disability, was the last to find out about their health because it hadn’t been explained to them in an accessible way. It’s terrible that people aren’t being kept up to date about their own health.

But it could be worse: 1,200 people with a learning disability die avoidably in the NHS every year. That’s three people dying unnecessarily every day. If staff had the right training and knew the reasonable adjustments disabled people need, this could be stopped.

The government and the NHS need to prioritise providing disability training to all staff, as well as educating medical students. If healthcare professionals had a better understanding of learning disability, they would be able to provide good quality care to everybody, regardless of whether they have a disability or not.

Join our network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

Ismail Kaji

The GuardianTramp

Related Content

Article image
NHS workforce must change to meet demands on health service
Today’s workforce not equipped to deal with ageing population, younger generation’s habits and increasing demand

Sarah Johnson

04, Jun, 2015 @10:41 AM

Article image
Healthcare staff: tell us about the inappropriate demands on your time
We want to hear from nurses, paramedics, doctors and other professionals about the times you feel you shouldn’t be seeing the patient in front of you

Sarah Johnson

27, Sep, 2016 @10:20 AM

Article image
NHS survey reveals staff are determined to make the best of tough conditions
Findings of world’s biggest workforce study are both shocking and uplifting – and should prompt healthcare leaders to act

Richard Vize

09, Mar, 2018 @2:36 PM

Article image
Can the NHS realise David Cameron's ambitions for seven-day services?
A shortage of staff and money mean the prime minister’s dream of a seven-day NHS may remain in the pages of his election manifesto

Edmund Stubbs

08, Jul, 2015 @7:35 AM

Article image
A receptionist saved my life and other love letters to healthcare staff
Caring nurses, skilled surgeons and quick thinking midwives. Readers recall health workers who changed their lives

Sarah Johnson and Guardian readers

05, Jan, 2017 @9:43 AM

Article image
Eight things the new government should prioritise for the NHS
From investing in mental health to keeping the NHS free at the point of delivery, healthcare leaders tell us what they want to see addressed

Sara Naraghi

08, May, 2015 @10:07 AM

Article image
Election 2015: what do party pledges mean for NHS staff?
The NHS is centre stage in the parties’ manifestos; there are subtle yet significant differences between their commitments

SA Mathieson

21, Apr, 2015 @11:56 AM

Article image
What will it take for the government to confront pressures on the NHS? | Richard Vize
There is no safety valve for a health service running at full throttle with frazzled staff. The potential for significant harm to patients is increasing

Richard Vize

05, Jan, 2018 @11:43 AM

Article image
The care I receive has improved, but I fear for the future of the NHS
As an older person I’m happy with the treatment I get from the NHS, but I wish government and leaders in the health service would listen to opinions like mine

Dick Vinegar

12, Feb, 2016 @7:45 AM

Article image
If Jeremy Hunt were a doctor he'd be hauled before a tribunal
The health secretary has misled the public and demoralised the entire NHS family – it’s no surprise there are more strikes

Kailash Chand

09, Mar, 2016 @9:45 AM